supporting communities in an increasingly decentralized biomedical research ecosystem
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The document discusses decentralization in biomedical research through pilot approaches and infrastructure that provide reusable solutions. It highlights several research communities and challenges that operate under principles of open science, network science, and participant-centered science. Lessons learned include the importance of community building and ensuring data sharing has a purpose. The goal is to bridge traditional research and digital ecosystems by going directly to participants and promoting an open research model.
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supporting communities in an increasingly decentralized biomedical research ecosystem
- 1. brian m. bot | principal scientist | 2017 apr 30 sage bionetworks creative commons global summit in an increasingly ed | @BrianMBot biomedical research ecosystem supporting communities: decentraliz
- 2. ation the process of redistributing or dispersing functions, powers, people, or things away from a central location or authority wikipedia decentraliz
- 3. pervasiveness of networked information cloud infrastructure democratization of research process funders and public pushing for > sharing in biomedical researchationdecentraliz
- 5. recruitment data generation data analysis institutional silosbreaking down
- 6. pilot approaches to create open systems, incentives, and norms network science open science participant centered science decentralization sage bionetworks Pilot Systems and Approaches
- 7. build infrastructure that provides robust, reusable solutions Pilot Systems and Approaches Infrastructure network science open science participant centered science decentralization sage bionetworks
- 8. decentralization sage bionetworks Pilot Systems and Approaches Infrastructure network science open science participant centered science support a that operate under these principles research communities
- 9. ras-ness repository project type 2 diabetes ctcap research communities
- 10. tcga pancan common mind ras-ness breast cancer challenge multiD
- 11. tcga pancan common mind ras-ness crcsc psych encode amp ad breast cancer challenge alzheimer's challenge digital mamography oncology neuroscience challenges
- 12. tcga pancan common mind ras-ness crcsc psych encode amp ad breast cancer challenge alzheimer's challenge digital mamography oncology neuroscience challenges
- 13. tcga pancan common mind ras-ness crcsc oncology psych encode amp ad neuroscience breast cancer challenge alzheimer's challenge digital mamography mPower mole mapper mHealth challenges
- 14. our approach open: as a guiding principle, but not a dogmatic position cloud: as our native solution, but not the only option
- 15. bridge the divide between traditional biomedical research and a fully digital and networked ecosystem biomedical research deeply rooted in it’s practice
- 17. don’t share for the sake of sharing necessary, but not sufficient
- 19. analytical challenges unbiased, consistent, and rigorous method assessment sampling of a space of diverse methods
- 21. be mindful of when open is appropriate unintended consequences
- 23. identify your end goal align incentives to get you there
- 25. A B C D E F 1 2 3 4 5 6 expert team data subtype crc subtyping consortium
- 26. A B C D E F 1 2 3 4 5 6 ... expert team data subtype crc subtyping consortium
- 29. go directly to the participants a new model of research
- 30. Healthmobile
- 31. Healthm
- 32. insular health trackingmove beyond
- 33. > 200 million smart phone users in US insular health trackingmove beyond
- 35. >75%
- 37. 2015 march
- 38. march 2015 launch partner 5 initial apps 2 sage led all 5 supported by sage technologies 60,000 participants in 1 month
- 39. >70% opted to share broadly
- 42. x y z userAcceleration gravity rotationRate attitude device motion readings at 100 hz gait / balance
- 44. Monty Python's The Flying Circus
- 49. data releasemPower six month promote an ecosystem where research is conducted for others to consume 9,520 unique participants 8,320 completed at least one task 198,639 total activities and surveys completed 1,087 self reported parkinson diagnosis
- 50. mPower six month data release task name type of task and schedule unique participants unique tasks demographics survey - once 6,805 6,805 MDS-UPDRS survey - monthly 2,024 2,305 PDQ8 survey - monthly 1,334 1,641 memory activity - t.i.d. 968 8,569 tapping activity - t.i.d. 8,003 78,887 voice activity - t.i.d. 5,826 65,022 walking activity - t.i.d. 3,101 35,410
- 51. Parkinson’s Disease Foundation Eli Lilly AstraZeneca Apple Verily Intel Infocepts Posit Science MIT The Ohio State University University of Otago University of Texas Health Science Center Istanbul Sehir University University of Iowa University of Virginia University of Toronto Johns Hopkins University Vanderbilt University University of Rochester McGill University Xi'an Jiaotong University University of Washington Harvard University mHealth research communityParkinson study data released before any primary publication 100+ independent ‘qualified researchers’ working towards building a PD research community
- 54. funders pushing for greater transparency and return on their investment technology development moves fast, upends traditional models of research regulatory aspects have lagged and are rooted in ‘old’ system social aspects are often largest barriers and move at a glacial pace increasingly decentralized research ecosystem
- 55. our approach open: as a guiding principle, but not a dogmatic conviction cloud: as our native solution, but not the only option
- 56. the disrupts the ecosystem source (code) no longer enough (users used to download tool to run locally) open cloud
- 57. (now users interact directly with software / platforms as services) *** as a service (users expect it to work 24 hrs a day) the disrupts the ecosystemcloud (and on every device) (stacks of platforms built on top of one another)
- 58. the system is buffered to resist change important to strategically push where you can effect constructive change
- 59. … increasingly decentralized research ecosystem ?
- 60. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites” increasingly decentralized research ecosystem ?
- 61. There is concern among some front-line researchers that the system will be taken over by what some researchers have characterized as “research parasites” increasingly decentralized research ecosystem ?
- 62. we all operate in the existing ecosystem and are, therefore, complicit in the change or lack thereof the system is buffered to resist change
- 63. brian m. bot ———————— principal scientist sage bionetworks brian.bot@sagebase.org @BrianMBot thank you! team sage researchers analysts data scientists designers software engineers governance experts community managers dreamers sagebase.org/careers